Angela Morgan, Chief Executive, Includem
As always – and may I suggest by contrast to some other conferences in Scotland– the CCPS conference combines a serious reality check with a focus on aspiration, pragmatism, leadership and influence. And this year it was good that we did a bit of grappling with the debate around formal and informal support networks -services – families -communities. Its one that needs continuing.
If any of us needed a further reminder of what might be coming down the line then the picture from south of the Border certainly made it pointy.
The long term risk is of collective development of “Learned Helplessness”. This is the well recognised psychological condition through which as human beings we find out if our actions can elicit an impact – even a bad consequence is better than none when our actions have no consequences and we eventually give up trying.
Yet as always the beacons of hope often arise in the individual and collective determination that regardless of systems, structures and processes keep us focused on what our purpose is – quite simply summarised as helping people live better lives of their own choosing.
It is the beacon that makes things happen-even if just on an individual basis. Empowerment for all parties ….
So with these thoughts in mind I pitched up to a social event Friday evening and started catching up with some of my lovely oldest friends……
…….lets call her Linda – has a private arrangement as “a cleaner” with an elderly couple. Lets call them Mary and Martin- both suffering advanced stages of different types of dementia.
Linda “cleans” twice a week, spending 2 hours each time. She is the only person they will allow to do anything in the house. Linda is the only person who can persuade Mary to change her clothes – she tracks down and then removes all the dirty laundry, takes it home to wash and smuggle back in.
She knows all of Mary and Martin’s quirks. She knows where to look for last week’s packet of unwrapped ham and is ready when the biscuit tin is offered full of haddock and porridge oats, laughing and saying she is sweet enough, clearing it out out of sight . She has researched their respective conditions and talks knowledgeably about how their symptoms affect them.
She talks about them like her own family – she loves them and it sounds as if they love her.
Some time ago as she saw the increasing difficulty Mary and Martin were facing living at home, and after considerable soul searching, Linda initiated contact with Social Work in the area.
She is recognised as the SW main (only) source of assessment data (though Linda wouldn’t call it that). Over time as concerns have increased, formal processes have escalated with talk of nursing care and connection established with a distant cousin – lets call her Celia – now involved in formal case conferences. Not previously invited, Linda was present at the last crucial decision making meeting where it was agreed that Mary and Martin should be moved to a Nursing Home.
It was Linda who said “no they cant be in bedrooms on different floors – they are devoted to each other, Mary will spend all night looking for Martin and be frantic. If you have to do that why don’t you make one a bedroom and one a sitting room”.
It was Linda who said “yes they do sleep in the same bed – I know because I change their sheets every week”.
It was Linda who said “and what about their car thats been impounded since August at £20 per day so there’s now a bill of £2500?”
And it was Linda who said “yes it does matter – it’s their money”
It was Linda who said “no they wont buy the idea of leaving home to go to a hotel for a break, but if you suggest that its a move for Martin to have a driving fitness assessment they will be fine with that”
And when Celia referred to “the cleaner” the Senior Social Worker – let’s recognise she’s a human too and call her Susan- it was Susan who said “No – that’s Linda”.
So Mary and Martin are being moved next week – to two rooms on the same floor and yes, one will be made a bedroom and one a sitting room.
Linda has packed their bags for the initial period “ I know where the clean clothes are”.
She will be there on the day they are moved. She says that David her husband and my friend Eleanor her mum are really happy to visit Mary and Martin with her.
Then Linda says “ I know its right but I feel terrible – I feel as if I have betrayed them”.
Public? Private? Family? Community? Social? Partnership?
To use a cliché – the world in a grain of sand. While we grapple with the macro level risks and uncertainties of politics and policy its worth a pause to celebrate all the Lindas and the Susans in our own structures who regardless of all of that are just doing away and achieving “outcomes” in the messy and complex world of care for human beings.